The tale of: a parasite infection of my body and brain; how "friends," family, and medical professionals helped contribute to it largely destroying my life; and (reflections on) what I've done and has happened to me since then.

Friday, October 4, 2013

I've told much of my nightmare healthcare story via this blog, but I haven't spoken about it or updated it much for a long time. Even when I spoke in the patient stories track at Healthcare Experience Design 2013 this past spring, I began my talk with a few words about the start of my story, then quickly summarized things, then shifted the focus of my talk to words of advice to designers working in healthcare. Even with my current primary care physician, I have shared only a part of my story.

Something is going on.

This past weekend, I had the wonderful honor of attending Medicine X 2013. I attended as one of 30+ ePatient scholars, and as such, was often asked about my patient story. At the start of the conference, my response was always a short summary, shifting quickly to the attention I've been paying to what designers need to know or do to maximize their impact on the redesign of the healthcare system.

During the conference, several of my fellow ePatient( scholar)s took the stage to share their patient stories. They were vivid and rich, emotion-evoking gems, told with an impressive strength. Why doesn't my story flow from my mouth or keyboard any longer in such a fashion?

Also at the conference was the amazing Regina Holliday. Regina played multiple key roles during the conference, one of which was artist-in-residence. While in her artist role, Regina prepared to paint my patient story on the back of a sports jacket of mine to make me a member of the Walking Gallery -- a group of patient rights advocates donning jackets with their stories painted on their backs. "Resend me your story," Regina asked the evening before the conference began as I presented her with my jacket. Indeed, I wondered how she could possibly remember my story among the many to which she has been exposed. So I resent her my story -- or what I wrote of it in a email message I sent to her earlier in the year: a message which provided a summary of my story, pointing her to my nightmare healthcare blog and referencing my subsequent focus on advice to designers. I hoped that would be all she needed.

"I need you to come by to tell me your story," Regina pleaded to me during the conference, poised to paint on the primed jacket but not having enough or the right kind of information to proceed. I was getting nervous. Will I actually have to talk to her about details of my story, details I've been avoiding talking about?

Stop by I did, and indeed, I shared parts of my story with Regina that I haven't spoken about for a long time. And I became emotional while doing so -- akin to the emotion I experienced while listening to others tell their stories on stage.

I remain filled with emotion about my nightmare healthcare experience. I still cannot believe that medical personnel, members of my family, and people I thought were my friends could do what they did to me. Anger used to suppress the emotional pain, enabling me to share information about my experience. However, some of that anger has worn off, enabling me to be happy again but leaving many raw feelings exposed. So, I've sought some psychological distance between me and my nightmare story, choosing to discuss it rarely and often shifting the focus of the conversation to what I've been trying to contribute via my advice to designers.

But there is still considerable power in my story. And I can now wear my story on my back. I am ready to discuss my story again.

Two days ago, I wore my Walking Gallary jacket to the classes that I teach at the Academy of Art University. At the end of each class, each student shares something with the entire class that they consider to be inspirational. This time, I took a turn and shared the story of my jacket and the Walking Gallery as well as a part of the story of my nightmare healthcare experience. I became emotional while doing so, but the students were glued to my every word.

Thank you, Regina, for adding me to the Walking Gallary. It is truly an honor to be a member.